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Ethical Issues Raised in Play About Havasupai Tribe’s Fight to Limit DNA Research

Tish Leizens

3/3/14

When the curtain rises on March 28 at the Geva Theatre Center in Rochester, New York, an ensemble cast of five actors will tell a penetrating and engaging story on Native culture, health and genetic ownership, based on the true story of the Havasupai Tribe of Arizona who won a legal fight to limit research on the use of their DNA.

Against the backdrop of large screen images, such as an endless genome sequence and crackling campfire, displays of cave paintings and rhythmic sound of drums, the 90-minute play entitled “Informed Consent” begins with words storytellers often say: “Once upon a time … I remember…”

The story that grabbed headlines and attention from the Native community, educational, medical and research communities in 2010 may have started with the pure and clear intention of understanding why a tribe who lives at the bottom of the Grand Canyon suffered devastating rates of diabetes—but its ending is by no means clear cut.

Today, some 14 years after a geneticist and researchers from the Arizona State University gathered blood samples from tribe members and a settlement of the case in favor of the Havasupai, relevant questions are still being asked—and answers don’t come easy.

“In any research model, scientist must ask themselves: what is the benefit to the Native American subjects? Secondly, what are the ethical standards that a professional must adhere to? Then ask yourself how would you wish to be treated,” said Peter Jemison (Seneca), manager at the Ganondagan State Historic Site.

Jemison joins Dr. D’Angio from the University of Rochester’s Clinical and Translational Science Institute in a panel discussion after the play presentation. The discussion is moderated by Sean Daniels, director of the play that will again be shown in Ohio’s Cleveland Play House, April 23 to May 18.

“Informed Consent” is being used as a vehicle to raise funds for varied cultural and educational events for the Ganondagan State Historic Site. Meg Joseph, executive director of the non-profit Friends of Ganondagan, said showing the play is also a perfect platform to create a dialogue surrounding cultural sensitivity and respect.

“The relationship between Native Americans and scientists must be built upon trust. If that trust is broken repairing it is nearly impossible,” said Jemison.

“I was struck by the clash of cultures. The scientist at the head of the study didn’t concern herself with the history and culture of the tribe. Their creation story is that they sprang forth from the Grand Canyon. So, to publish studies that contradicted their belief system was devastating to them,” said Deborah Zoe Laufer, writer, as she referred to the Havasupai tribe.

Laufer, a non-Native, said she got interested in the story when she read an article in The New York Times. The newspaper article said that while tribe members agreed to provide blood samples, they were for studies that may provide genetic clues to their high rate of diabetes and not for studies on mental illness and theories of the tribe’s origins.

The legal case was settled in 2010 when the University’s Board of Regents agreed to return the blood samples, pay 41 of the tribe’s members $700,000 and provide other forms of assistance to the impoverished tribe, said the Times.

“This is not the first example of what I would call compromising of medical data of Native Americans that I heard of,” said Jemison. Natives, he said, should be cautious, knowing that this situation has already occurred.

“We are a country interested in faith versus science debate,” said Daniels. “Would you have your child tested to find out what her DNA says?” he says, touching on one of the topics raised in the play.

“How much information is too much information? How much information do we want to know?” said Daniels. “These are the kinds of questions for our times. There are no easy answers.”

“Informed Consent,” he said, is a great piece of art that he hopes spouses who watch it would debate on the way home or even the next day.

Back to the stage, Laufer hinted how impactful the moment was when tribe members, wearing their traditional dresses, travel hundreds of miles to retrieve their loved ones’ blood. “They are singing a Havasupai song and openly weeping. It’s devastating, and says more that I can possibly relay in dialogue,” she said.

“Once upon a time…..” The play ended the way it started.

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